No Rest for This Mom

In light of recent events, I’ve been thinking a lot.

I have two black sons. One has autism and even though he’s verbal, I still worry.

What happens if he gets pulled over? Will he react appropriately or will he act in a way that might get him killed?

Julian’s not a huge fan of rules, so this is one of my biggest worries. I don’t know how he may respond. There’s a few factors- is the police officer being kind or combative? Do they understand that my son doesn’t do eye contact well? Can they keep their composure should Julian react in a bad way?

When I say “in a bad way”, I mean being rude, argumentative, or even aggressive. I would love to think he would just be nervous, as many of us would, but I know that may not be what happens.

This may be three years away but I think ahead.

I plan on talking to both my boys about what to do if you’re pulled over. It’s a talk that I didn’t think would need to happen, but here we are. If it’s something that may mean the difference between my son coming home safe and me having to bury him, I will talk like there’s no tomorrow.

I watched some of the coverage from Minneapolis and it reminded me so much of the LA Riots. I was 10 when that occurred. I don’t remember anything from watching it unfold, but I’ve since learned about it.

Cameron would likely be nervous but I think he would comply. I still worry, because he’s a soft-spoken young man. He may ” look” white, but his hair and eyes say different. All three of my kids got my brown eyes and curly dark brown hair. (Mine is black, so the brown part is from Matthew.)

What about Lily? I have no idea when she would be able to drive because of various issues. I’m sure she would become very nervous and possibly cry. I worry about her too. Black women have been mistreated by the justice system, you just don’t hear about it as much.

My kids already know they “look” different, even in their own family. They’re the darkest kids on Matthew’s side and next to my mother, the lightest on mine. They have learned my reality of being stared at because of my skin tone. They’re not scared but they are aware.

My kids, however, have had it so much easier than I did growing up. That’s one thing I wanted so badly for them. I didn’t want them to be the only biracial kid in their class, one of a few in their grade. It’s basically the opposite for them.

Lily’s had friends whose families came from other countries. Cameron learned Spanish from a friend in middle school because he was born in Puerto Rico. They’ve been taught to accept people for who they are, not what they look like. They don’t even think of not being able to play at a friend’s house because they are biracial.

I did as a kid and it’s devastating. I was in the second grade and felt like something was wrong with me because I wasn’t black or white. My mom, being the badass that she’s always been, told me something along the lines of “that’s on them. You’re great the way you are.”

Both my boys can run pretty fast and well- we just watch Cameron closely. Julian is better at running and I hope he (or Cameron) never has to literally run for their lives.

I hurt for all the families that have lost someone to police violence. There’s no excuse for that, not should it be brushed off by the local government. Somehow this happens and riots can be a result. I’m not condoning the rioting, but sometimes people run out of better options.

The LA Riots started over anger after a period of police-related incidents, the most well known being the Rodney King case. Five days of rioting followed after not one of the four police officers involved in his beating were found guilty.

In case you haven’t realized it, I am proud to be black. All day and tomorrow, as Lil Wayne once said. I was raised in a home that celebrated blackness as much as possible. I can’t imagine being ashamed of this. I’ve raised my kids this way. It’s hard enough to be biracial without extra shame. I do realize that not everyone was raised this way and I feel awful for those who weren’t.

I chose to marry a white man. He’s who I love and want to share my life with. Some of the cousins on my dad’s side were mad and guess what? I don’t speak to them. One of Matthew’s uncles felt similarly and he wasn’t invited to the wedding. We haven’t seen him in years, both of these by Matthew’s choice. I wouldn’t dare force that.

My children are more than a hashtag. They are three different people that I am trying my best to guide to be good people. They are similar to millions of other kids- they just want to live.

Pics courtesy of pinterest

Another post on this topic: My Sons’ Future

The Benefits of Early Intervention

Kids develop at their own pace. There are timelines in which we usually expect things to happen, like crawling, walking, talking, etc. Some kids skip a phase entirely, for example, Julian barely crawled before learning to walk. A kid that talks in 3-word sentences at 2 1/2 may have walked at 10 months old. It’s hard to tell when these milestones may occur.

Sometimes, kids hit milestones later than they should. This is due to a lot of factors- prematurity, lack of time with parent/caregiver helping them learn things, etc. I’ve also learned that sometimes delays happen for no reason at all. Lily has done things on her own time since the womb.

She wanted out at 31 weeks, but my OB stepped in and stopped her. The day after I reached 37 weeks, Lily had had enough and she was born later that day. Being three weeks early, she weighed in at 5 lbs, 12 oz, the smallest of my kids. I could pick her up with one hand for a month (not that I did). She wore preemie clothes for a couple of months. In 2008, preemie diapers were a pain to find and I was delighted when she finally grew out of them.

She has always been a great sleeper. As a baby, we could barely hear her crying because she was so quiet.Twelve years later, you can definitely hear her if she cries and she loves to sleep.Lily was a small baby and everyone loved cuddling and playing with her. Her brothers actually fought over who got to put her bottles in the sink to be washed. (They were 3 and 1 1/2 at the time.) It took some time before I realized that she wasn’t reaching her milestones.

I mentioned to her pediatrician at a checkup that I was worried because she wasn’t crawling, pointing to things she wanted and a few other things. I was given a phone number for an Early Intervention program, known locally as First Steps, and advised to schedule an evaluation.

The evaluation was the day before her first birthday. It broke my heart watching her struggle to do things she should have been able to do or at least try. As soon as the evaluator left, I burst into tears and cried through the next day. I knew something was wrong.

Lily turned one and started First Steps almost immediately after. She had physical, speech and occupational delays. This is also referred to as “global” delays. In her case, it was hard to tell what caused these delays. She wasn’t born early enough for that to be an issue. I took care of myself the best I could throughout the pregnancy- I worked full time and chased the boys around. After going into labor at 31 weeks, I basically sat and did nothing as my OB recommended, including going on light duty at work. I didn’t drink, do drugs or anything that could have harmed her. I was at a loss.

Lily had great therapists- I am still Facebook friends with Denise, her speech therapist. Denise was the only therapist that stayed the whole two years because Lily needed extensive speech therapy. The other two therapies lasted for about 6 months (physical) and a year (occupational). When she got to preschool, her teachers asked if she had ever recieved speech therapy because she talked so well. I explained that she did and that Denise did a great job.

It wasn’t all sunshine and rainbows- Lily would throw herself on the floor because she was frustrated trying to talk. She hated the sensory suitcase that the OT brought to see what textures she could and couldn’t tolerate. When learning to run, she ran into her open bedroom door, cutting her forehead. There’s a scar, but she doesn’t remember how it got there!

Of course, during all this, Julian started showing behaviors that would later lead to his diagnosis. It was a rough time for all five of us and it almost led to the end of my marriage. I’m glad that I was able to get Lily what she needed. She is still seeing a dietician and will be starting OT again very soon, whenever the world opens up.

What Do I Do? How can I find help for my child?

As I said earlier, I talked to Lily’s pediatrician at a checkup, but you can call or email your child’s pediatrician whenever you think is necessary for this issue. Some pediatricians may take a “wait and see” approach but if you think it’s more serious, don’t be afraid to push for your baby to be seen.

Most, if not all states have programs that provide early intervention services to kids ages birth-three. The program in Louisville is First Steps. There’s an evaluation and a meeting afterward to discuss what may or may not be needed. If you don’t like the therapist you get, it’s easy to change. At three, your child is no longer able to receive these services and will be evaluated to see if they need to go to Head Start for more therapies or if they can be discharged and go to preschool.

Lily was evaluated a month before her third birthday and she aged out. She went to preschool that August.

I will say this as a mom who has been there: DO NOT BLAME YOURSELF. I did this for a long time, even after I knew that Lily’s delays were global and there wasn’t a reason for them. Just remember that you are doing the best you can, which is what really matters.

So what ARE the benefits?

  1. Obviously, getting early intervention services can help your child not get further behind in their development than they already may be. If you elect to not get services at all, this may mean a lifetime of difficulties for your child. There is no shame in getting your child assistance. It’s most effective when done early. Had I waited longer to get Lily into First Steps, or not done it at all, she would still be struggling with her speech. I just wish I had picked therapies back up a little earlier than I did.
  2. The therapist(s) come to you. This Discusses the legal requirement of the IDEA (Individuals with Disabilities Education Act) of therapists coming into a child’s natural environment as much as possible. Children learn better when in a familiar place.
  3. You are involved in the team that works with your child. You get to say what services you do and do not want your child to receive.
  4. Therapists and others working with your child can help you get other services, should you need them.
  5. Your child can improve their skills at their pace and not feel rushed. The therapists can model what you may need to do between sessions.

There is something great about watching your child learn and grow through their therapies. Your child may need extra help, and this is okay. Your child will be better off having had early intervention.

Autism: A Life Changer

Kids are wonderful. They will make laugh, cry, maybe question your whole life.

When your child receives a major diagnosis, it takes time to accept it. It takes time to move forward.

You can read about my coming to terms with Julian’s diagnosis here

There are so many varying thoughts and theories about autism. This makes for a lot of different ways that people with autism are treated, even by their own families.

I speak about that in another blog post, Family Acceptance

Everyone reacts differently to a diagnosis. Some of us are relieved (me), some are devastated and others become angry. It kind of depends on the road you took to the diagnosis.

Even if your child is verbal and able to take care of themselves, it doesn’t mean you worry less. Julian is a concrete thinker, struggles with empathy and isn’t the best at advocating for himself. I realize these things may hold him back in the future, and he’s a teenager now. He will be 14 in July, a fact that makes me sad.

I worry a lot about his future. I realize that I won’t always be there to get him what he needs or remind him that he hurt his sister’s feelings because his intended joke didn’t seem funny to her. I wonder how he will do living on his own.

But yet, I have faith in the kid. He’s very smart, analytical, and does great with managing his money. I have the feeling I will keep a close eye on him as long as I need to.

I’ve never met a parent that planned for their child to have autism, ADHD, or many other developmental disabilities. We just hope for the best. I’m not sure I would change Julian having autism because it’s part of who he is, but I would take away the struggles he’s had.

Adjusting to an autism diagnosis can be difficult. Changing your and your family’s life to meet your child’s extensive needs can be a lot- but it’s worth it. It may require outside help and this is okay. I struggled for a long time with this when Lily was a toddler in First Steps.

One of the best things you can do is research. It’s so helpful. Researching will help you gain insight into how to deal with behaviors, to remind yourself that none of this is your fault. You’ll be armed with information to answer questions from others.

Another good thing? Know your kid. If you know your child won’t touch certain foods or textures, you’re more likely to make adjustments with food, clothing, etc. This also helps during school meetings. Knowing your child will make things easier on everyone involved.

One of the more interesting things about raising a child with autism is that it changes how you see the world. By the time Julian was diagnosed, I had already been working with kids with autism for a couple years.

You look closer at the small things. You become a “mama bear”, ready to fight someone over your child’s needs. I’ve done this many times and it’s gotten great results. Julian knows that I always have his back. You learn to see the world in a different way- not everyone accepts or understands autism. This stinks but it’s very true.

Autism is a life changer, whether you’re the person that has it or you’re raising a kid. Everyday is different. Your road to parenting is a bit bumpy but not passable.

Looking At the Bright Side

A Dark Day Brings Light

November 23, 2011, was a dark day at my house, but yet it brought a lot of light to my mind. That is the day Julian was diagnosed with ADHD (combined) and traits of Asperger’s Syndrome. (This was later amended to a full diagnosis and he is now considered to be on the autism spectrum because Asperger’s was removed from the DSM-V.)

Autism meme

It brought tears and peace at the same time. I finally had answers to so many questions. I wasn’t a bad mom, there was actually a reason he was doing all these things.

I finally had tools to help him. I could help him calm himself so he wouldn’t throw toys, hit his siblings or myself. I might even get dinner done on time some nights instead of stopping to deal with Julian’s meltdowns.

Losing Perspective

Somewhere in the middle of trying behavior charts, evaluations and basically bribing Julian to act appropriately, I’d forgotten the good things about him. He did have those, like every other kid.

Don't say sorry

For example, Julian is so intelligent. For the most part, he’s always done well in math and science. He hates reading.

There is a bright side to having a kid with special needs. It changes you in ways you never thought possible. You may have learn a lot about the diagnosis (or more than one), but you’ll be able to spread awareness about it. I’ve become very vocal about ADHD and autism.

You can read my thoughts on the vaccination/autism debate in this post:

The Autism/Vaccine Debate

I’ve walked for a local organization for families of children with autism. I worked with kids with autism for almost five years, and I loved it. It makes it easier for me to deal with the struggles.

I know I’m far from alone because there are many families that have the same day to day issues that I do. This includes some of my friends.
I’ve learned that you have to be a different parent for each kid.

What works for Lily may not work for Julian. Cameron responds a lot differently to things than his siblings. We have had to adjust to Julian’s quirks and needs and become a lot more creative and open-minded. I’ve had to think on my feet a lot and outside the box a lot more.

Learning to Adjust

I never really went through the stage that some parents do in which they grieve what they imagined what their child would be able to do. Julian will still have a full life- he will just have a few bumps along the way.

Swing
We are able to see the world through a different lens with Julian- slightly narrowed thinking, a dry sense of humor, ability to help with or without asking- he loves to help his dad and grandfather do “big guy stuff”. He does show emotions, but we are still working on empathy.

I have become tougher. I don’t see this as a terrible thing. I’ve learned to fight for what Julian needs and I will do that until he can do it on his own. I won’t let him be in the world on his own without knowing how to get help if he needs it and without the skills, he needs to navigate his issues.

We do have bad days as parents, with or without special needs kids. Looking at the bright side can help bring our focus back to the positivity around us- our kids.

Five Ways to Avoid Holiday Meltdowns

Meltdowns are not a fun event, no matter what day of the year it is. Most of the time, they can be avoided, but sometimes, it’s entirely out of our control. To learn more about meltdowns, you can read The Truth About Shutdowns and Meltdowns

Give thanks

Bringing Down The Stress

The holiday season can be a stressful time- starting with Halloween and ending at New Year’s Eve. This can depend on which holidays your family celebrates- some families don’t celebrate anything at all, some celebrate everything.

Isn’t that neat? My family celebrates Thanksgiving, Christmas, and Chanukah. My mother is Jewish, so we go to her house every year to have some fun over the eight nights. It’s fun but can get a bit tiring, so we go at our own speed.

Things can be a bit more stressful if you run into family members that don’t understand your child’s special needs- especially if they don’t want to. There is a difference between not knowing and not wanting to know. This topic is a bit more detailed in Helping Your Family Understand Your Child’s Special Needs

Overall, there are ways to help your family get through the holiday season in a way that everyone can remember fondly.

Upset child

Five Golden Rings…I Mean, Tips

  1. Avoid places with crowds, loud noises, etc. Many kids with special needs do not like the line to see Santa. It’s loud, bright, and if you’re Julian, there are germs everywhere. Some kids do not do well in crowds, because it’s too cramped, things move too fast, and sensory issues can be caused by very small things that we are not aware of. Some places are becoming more aware of this and are offering sensory-friendly gatherings, so look around in your area.
  2. Be flexible. This is most likely the most important tip. Flexibility is a requirement in parenting, but in this case, there’s more of a need. Things can change in a second with our special needs kids, and this is okay. Things can become just too much for them, and they need the ability to find a quiet spot to calm down in or leave entirely. Bring two adults to events so that one can stay with the other children, bring adaptive equipment, etc.
  3. Watch out for wandering. This can occur when a child needs to escape quickly from a situation they do not want to be in- a loud party, for example. Keep an extra-close eye on your child near doors and other routes away from your location.
  4. Keep up your routine. Most kids are on a break for a week before and after Christmas. It’s important to keep up a daily routine- eating and sleeping as close to usual times as you can. Kids do better when they know what is going on. It keeps their anxiety low and they are less likely to get off-track with behaviors.
  5. Take a break if you need it. If things get to be too much for you and/or your child, it may be time for a break. Don’t go to the next party. Don’t worry about the next celebration. Stay home, watch a movie and snuggle up with your family. This can be more fun than going out and potentially creating more stress.

Christmas gifts

The holiday season is upon us, the weather is getting colder. Let’s make great memories with our families.

What tips do you have to prevent meltdowns with your kids?

Photos courtesy of Unsplash

Information from CBS

Twin Mummy and Daddy